Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Exposure From Other People In Your Life.....

Ellenor Whitty

By Ellenor Whitty
in Coping with Celiac Disease

Recommended Posts

Ellenor Whitty Newbie
Ellenor Whitty
Posted

(This is a re-post from a reply I made to someone in another part of this forum.....)

GREETINGS, FELLOW CELIACS:

WOW, I wish I was dating a Celiac llike me (or married to one)! This kind of situation would make life SO MUCH EASIER for Girls Like Me, rather than beng with some slob who drinks BEER or SCOTCH every day! (Been There, Done That.)

I now point-blank tell guys that if they want to date me, kiss me, and/or get all silly & romantic with me physically, then they CANNOT drink beer or grain-based alcohol when we are together. I am DEAD SERIOUS about this, too!

They can drink all of the wine, tequila and potato-based vodka they want (like the fabulous "CHOPIN" vodka, which is both potato-based AND organic), but nothing else, otherwise they will make me have a gluten reaction.

I simply will not make out with or have sex with a man that will cause me to have a gluten reaction, due to what HE consumes and retains in his body.....

I am totally allergic to men that drink beer, scotch, and any other grain-based alcohol (adult beverages). Celiac girls (like me) ESPECIALLY cannot even tolerate exposure to the saliva and the semen from guys like this either, which I will explain more about after you continue reading this......

No kidding, I finally discovered this after YEARS of trying to figure out WHY I STILL had DH all over my face and these outrageous rashes all over my body while dating/being with macho beer & scotch drinkers.

My discovery happened because my (former) live-in/out boyfriend of 10 years was drinking beer and/or scotch daily.

Here's how it works for me..... this may not be the same for everyone, but still, I would like you to consider this as a possibility for you if you have celiac problems and date a man or woman who drinks beer and grain alcohol beverages on a regular basis.....

If I make out with a guy, or get all physically silly & romantic with a man who has been drinking beer or grain-based booze, I will later on (usually within 24-72 hours later) break out in a weird splotchy rash on my arms, legs and torso, AND get all kinds of quasi-DH eruptions all over my face. The more continuous exposure I had with guys like this made my celiac problems worse.

Believe me, it took me YEARS to finally figure this situation out. I know of no official medical or scientific studies to back up my claims, but listen to me anyway.....

I am a seriously CAREFUL celiac, and do not make mistakes when it comes to any exposure to gluten that I would be personally responsible for.

Still, I kept having gluten skin problems for many years while I was dating this fellow who drank beer/scotch daily.....

It just NEVER occurred to me that being with someone- as in romantically- who indulges in gluten products will also cause ME to have a "reaction." But this happened to me!

Without going into personal details that would make you blush, I will now state that..... I "know a girl" who is also a Celiac, and "she" gets a "problem" whenever she makes out with a guy that drinks beer or grain-based alcohol. Her system will go totally haywire whenever she is exposed to the saliva or semen of any man that drinks beer and/or grain alcohol. "This girl" will experience next-day PIV (Pelvic Inflammatory Disease), along with horrible cystitis, if she has sexual relations with a man who drinks beer/grain alcohol liquids.

OK, this is just me confessing here, but all of you other girls & guys out there...... consider this as a possibility if you do not feel well, and your partner is guzzling beer or grain alcohol.

I would NOT waste my time writing this message to the general public unless I was mega-serious in sharing this information with Celiacs Like Us.

The prevention of gluten exposure is a pain in the @ss to regulate, and I want to help ease the pain we all suffer by asking you to consider that those around you may be a possible gluten exposure factor in your life..... especially when you make out with them, or have sex with them.

CONCLUSION: you may be doing the Right Thing, but is your spouse/significant other also doing the same?

LAY DOWN THE LAW and tell your partner to be considerate of you!

So far, I have met only ONE man who has agreed to my "No Gluten" dating & dietary laws, and he is a precious, adorable nerdy IT guy who also believes in organic foods. I am lucky, I guess. He acts like he is GOMEZ ADDAMS and/or PEPE LE PEW when he is with me, so I have no reason to complain, I suppose..... at least he is sincere.

And..... he does not make me break out with DH or a weird rash! (Oh la la!)

Ruth Ellenor Whitty

Houston, TEXAS

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sbj Rookie
sbj
Posted

Nominated for Post of the Year (comedy)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,873
    • Most Online (within 30 mins)
      7,748
    kellz
    Newest Member
    kellz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.